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Non-verbal autistic woman (article in Newsweek)

(17 Posts)
Eulalia Sat 05-Mar-05 18:10:10

There was an article about autism in Newsweek. This is part of it. I tried to access it online but you have to subscribe so I just retyped this bit -

‘My Mind Began to Wake Up’. Lost and found: One woman’s remarkable transformation.

- Sue Rubin, Film writer with autism

Sue Rubin doesn’t remember much about the first 13 years of her life: “Sadly I was locked in autism.” And from inside that locked-up place, “I actually only remember waving to regular school” and at regular life. “That’s a nice way to put it, Suze,” her mother, Rita Rubin says ruefully. Sue used to beat her head against the concrete floor at her school, and regularly bit, kicked and pinched per parents. She was considered severely mentally retarded with an IQ of 24, and through years of what her mother calls” every therapy you can imagine,” she remained utterly unresponsive. “Holding Sue was like holding a sack of potatoes, because you got nothing back,” Rita says. That slowly began to change in the fall of 1991, after a school psychologist in Whittier, Calif., where the Rubins life, suggested that Sue try communicating with a keyboard.

“As I began to type, my mind began to wake up,” is how Sue, now 26, describes all that followed in the screenplay for “Autism Is a World,” a documentary about her life by Gerardine Wurzburgh. In the Oscar-nominated film, Sue writes about how words themselves became her way – not out of autism, but into the wider world.

A year after Sue began to type, she enrolled in mostly honors and advanced – placement high school classes, eventually graduating with a 3.98 grade point average, scoring 1370 on the SAT. Today she’s a junior history major at Whittier College and lives semi-interpedently, with an aide, in her home a few blocks from campus. In a paper she presented earlier this month, she wrote, “It was only after I began to type that my brain became organized enough to understand what was going on in the world around me… I became aware of people and their killer personal lives. I also realized the world was larger than Whittier, California… I began listening to the news and reading in the newspaper… Thinking about world events wouldn’t seem to have anything to do with learning how to control autistic behaviours. However that is what happened. As I became more aware of the world around me I also became more aware of myself and my autism.”

As always, however self-awareness was a mixed blessing: “It was awful seeing how different I am,” she types in an interview. It bothers her, for example that she still feels compelled to carry around a handful of plastic spoons. “I knowingly contribute to my looking retarded,” by doing so, she says in the film. “But spoons are my comfort. I cannot explain how or why I need them, I just do.”

Sue still can’t communicate verbally beyond a few phrases; instead, she types into a machine that then speaks each sentence for her at the push of a button. Critics of facilitated communication, the keyboard method Sue uses, believe it usually reflects not the thoughts of people who have autism, but of their aides, who may be unintentionally guiding them. Sue, however, has typed on her own for several years now, and had a lot to say – on autism, politics and her favourite pastime, playing the ponies – in a recent interview at her home, where she was waiting at the door, holding her bouquet of spoons.

When she first started typing, Sue used an impressive array of swear words that shocked her parents, and she still loves to jolt new acquaintances out of any preconceived notions they might have about her interior life. What she really enjoys, she says is a day at the track, or better, a trip to Vegas, where she stands on a stool to play craps. She also likes Tom Petty, Bush bashing, shoe shopping – the day we met, she was wearing pink Uggs – and the occasional touch of sarcasm: “I’m actually just being a jerk,” she tells me at one point. “I enjoy giving answers that Melinda does not expect.”

Sue is most determined to dispel some common ideas about autism. She insists, for example, that people with autism are capable of empathy. She understands how others feel, she says, even if their problems sometimes strike her as trivial in comparison to her own daily struggles. And it bothers her that her face does not easily register all she does feel. Yet she manages to convey great urgency when she types: “Tell everyone that nonverbal autistic people are intelligent!”

Eulalia Sat 05-Mar-05 18:16:36

Here are another 2 of her articles - here and here

Davros Sat 05-Mar-05 18:18:16

Erm, started a thread called Sue Rubin a couple of weeks ago....

Eulalia Sat 05-Mar-05 18:28:58

Oh ... didn't see that but my presence here is patchy. I had a look at your thread but fortunately not replicated anything you said. This article was only published a couple of weeks ago so is very up to date. I am copying everything for a woman I met at the Earlybird course this week who has a severely autistic son.

Davros Sat 05-Mar-05 18:36:02

I'm just sulking coz no-one reads my threads BOO HOO! Pay no attention

Jimjams Sat 05-Mar-05 19:16:21

oh this is interesting she sounds similar to Lucy Blackman who also says she learned language by learning facilitated communication. It was also important to her to demonstrate her intelligence (and she learned language about the same age).

Sorry Davros completely missed your thread.

JaysMum Sat 05-Mar-05 20:08:22

Davros......I do!!!!

tigermoth Sun 06-Mar-05 07:48:54

That's an amazing article, Eulalia (and Davros). This has been the best thing I have learned on mumsnet for ages. Thank you.

Eulalia Sun 06-Mar-05 08:22:53

Here is a link to Davros's thread

Eulalia Sun 06-Mar-05 08:30:20

In Davros's article when she talks about movement it reminds me of the 'sleeping sickness' patients Oliver Sachs treated (recounted in his book 'Awakenings').

jabberwocky Sun 06-Mar-05 08:31:00

This reminds me of Temple Grandin . I don't know if it mentions it on her website but she is autistic and feels that her autism helps her relate to the animals on an instinctual/primitive level. She did a very interesting interview on npr.org .

jabberwocky Sun 06-Mar-05 14:48:54

bump

Davros Sun 06-Mar-05 15:14:40

Thanks for linking to my thread Eulalia, have stopped sulking now! Jimjams, I think you were having a baby at the time..... remember?

jabberwocky Sun 06-Mar-05 15:20:27

Now I'm sulking because no one has paid attention to my wonderful links!

Davros Sun 06-Mar-05 15:22:11

Oh, and your links were wonderful too. Temple Grandin is a bit different as she is totally verbal but her "special skill" is thinking in pictures and not words which is how she visualises and designs the facilities for cattle...... where they get killed at the end. Very ASD?????

jabberwocky Sun 06-Mar-05 15:24:22

YEs, it's very interesting. I'm thinking she was non-verbal as a child but can't remember for sure.

Davros Sun 06-Mar-05 15:31:04

Yes I think she was. I have seen her speak at conferences twice. She never calls herself AS, always ASD. I queued to get her to sign a book at one and it was so funny, as each person got to her they sort-of wriggled and looked at her and smiled, the usual sort of body language to someone you don't know but respect and know who they are.... she didn't look up, just kept signing with her head down.

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